CDKL5 Syndrome Ireland

CDKL5 Syndrome Ireland CDKL5 syndrome Ireland is a registered charity in Ireland (RCN:20107109) set up by parents of childr The CDKL5 gene was previously called STK9.

CDKL5 stands for cyclin-dependent kinase-like 5, and is located on the X chromosome. The X chromosome is one of the s*x chromosomes; females have two X's and males have one X and one Y chromosome. The letters are an abbreviation of the scientific name of the gene which describes what it does. The CDKL5 gene provides instructions for making a protein that is essential for normal brain development.

Although little is known about the protein's function, it may play a role in regulating the activity of other genes, including the MECP2 gene (of Rett Syndrome). The CDKL5 protein acts as a kinase, which is an enzyme that changes the activity of other proteins by adding oxygen and phosphate atoms (a phosphate group) at specific positions. Researchers have not yet determined which proteins are targeted by the CDKL5 protein. Most children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties (please refer to the FAQ's regarding signs and symptoms of CDKL5).

18/11/2025

Our fourth and final My Moving Brain Community Connect event took place at the University of Galway, opening conversations about the importance of brain heal...

At My Moving Brain event in Galway. Meeting with lots of nice people from various organisations representing neurologica...
01/11/2025

At My Moving Brain event in Galway. Meeting with lots of nice people from various organisations representing neurological conditions, support groups and patient advocacy groups.

This is an event being organized by FutureNeuro. All are welcome!
29/10/2025

This is an event being organized by FutureNeuro. All are welcome!

Address

Bray
A98CF60

Opening Hours

Monday 12pm - 12am
Tuesday 12pm - 12am
Wednesday 12pm - 12am
Thursday 12pm - 12am
Friday 12pm - 12am
Saturday 12pm - 12am
Sunday 12pm - 12am

Telephone

+353872696688

Website

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